The Diagnosis Debate

Should I or Shouldn’t I?

I am not claiming any expertise here; the following is simply a brief commentary on recent Twitter activity with purely my own perspective/understanding/thoughts…please read all the way through before any adverse reactions set in!

There has been a simply splendid amount of debate in social media of late concerning autistic individuals with an ‘official’ diagnosis (i.e. presumably a medical, clinical assessment followed by a ‘yup, you’re on the spectrum’ kind of response); sadly – very sadly – there have also been some hurtful comments flying about between individuals who oppose one another in relation to their position. My summary of the ‘discussions’ is as follows:

  1. Some people are extremely opposed to anyone claiming to be #actuallyautistic without some kind of professional (i.e. medical) corroboration, following what would (hopefully) be a thorough and objective assessment;
  2. Others claim that it is their lives, their knowledge, their research, and therefore their absolute right to identify as autistic irrespective of any external assessments;
  3. There appear to be a small number of people who may be guilty of jumping to conclusions based on taking a simple online test, or going down the road of ‘ooh, I did that once, maybe I’m autistic then…’ – I have to note, this particular group of people are possibly well meaning, fairly insignificant (statistically) and – while horribly frustrating and possibly even inadvertently patronising – may simply be demonstrating staggering ignorance rather than setting out to cause any harm, so we’ll leave them to themselves for the moment, if that’s ok…;
  4. From what I can gather there may also be a significant minority who deliberately choose to claim autism who actually are not – perhaps by being misguided, perhaps as a result of other neuro-diversities, but possibly even for a deeper, and darker reason – to cheat the system, manipulate, maybe feed some narcissistic habit – these are suppositions only, but others on Twitter have indicated as such and this group should therefore be acknowledged.

Ok – taking these point at a time:

  1. It is my view that one is autistic from birth – and from my understanding the vast majority, if not all, of good, validated research tells us the same. Therefore, one could say that the debate is a pretty simple one – the actual diagnosis does not make one autistic – however, it does corroborate it (at least if the assessment is an appropriate one). The debate, though, is more than simply what one might be able to claim – I accept that one can only claim #actuallydiagnosedautistic following assessment, but to depend solely on the assessment itself is surely a dangerous game to play? We know that whole swathes of the population remain undiagnosed, and we know there are individuals fighting for a diagnosis (or, in my preferred parlance, identification) who get turned down – not because of an absence of autism, but because of an absence of decent services to provide that identification. Where do these folk fit in? They are just as autistic as those with a formal identification, they just don’t have the report/letter/medical affirmation. I don’t know the answers, and I absolutely understand the various arguments, but hey, there is a problem here denying someone their own essential identity, surely? BUT – who is the assessment police? At the moment, one argument that doesn’t appear to have arisen is who knows best? Some adults – with an eventual diagnosis – have been to more than one professional only to get different opinions – which means that at least one professional has got it wrong! What about those autistic individuals who are denied an identification as a result of all those things we already know about in terms of a flawed system for identification? I know that there are arguments suggesting some people will carry on visiting professional after professional until they hear what they want – but how do we know that this isn’t because of the issues with getting a recognition, rather than there being nothing to recognise in the first place? Similarly, for those ‘self-diagnosed’ – is there an expectation that they need to corroborate their findings? Prove to the community that they’ve done their homework? Show their workings out? I worry about this, as I genuinely believe, and have been taught (by autistic adults) that if one genuinely believes one’s self to be autistic, and have read widely on the subject, then the likelihood is very strong that you are.
  2. Following on from (1) – of course this isn’t something that anyone should take lightly, but really – do that many people actually claim autism without due consideration, careful thought, taking and heeding advice, and concluding with a clear rationale? And, if so, what’s the problem with that? People are ‘allowed’ to decide whether they are gay without any formality – and, interestingly will be covered under the Equality Duty – yet autistic people are not afforded the same privilege. As someone once said to me – “why should I have to go to an NT doctor just to be told who I am, when I already know who I am and indeed know far better than him!” But there is a problem, whether one likes it or not. Current medical guidelines indicate that one has to be assessed by specific professionals in order to qualify for a diagnosis; therefore, unless one does go down that route, then officially one cannot claim a diagnosis. Aha – so here we are getting closer to one of the issues – that of the claim. I suspect many would argue that a claim of a diagnosis is not the same claim of being autistic (nor even vice versa). Is it as simple as semantics? Probably not, but it is worth pointing out…
  3. As already noted, not for now…
  4. Now – this is, for me, the major problem and quite possibly the main reason why there has been such heated discussions. If there are, indeed, a few people who deliberately set out to claim #actuallyautistic who do not ‘fit the bill’ – and, presumably, know they would be ‘found out’ should they go for a formal assessment – then a spanner the size of which is substantial is thrown into the proverbial works. All of a sudden the innocent get tarnished, those who have had the formal assessment are the only ones ‘protected’ as such, and the community divides. This should not happen; those few (and I really do hope they are very few) should not be allowed to influence the amazing community that exists in social media – the one of support, acceptance, understanding, sometimes profound disagreement – but done in an accepting manner – to have this threatened by a few individuals who are presumably a far cry from the integrities shown so often within the autism community, is devastatingly sad. It is in this context that I can absolutely see both sides – I suspect knowing there are some out there who are claiming something that they are not, and the only way to weed them out is by a diagnostic assessment, would lead to one being vehemently opposed to anything but an official diagnostic route – totally understandable! But surely, if this is the case (forgive me if I’ve got it wrong) then the fight should be against that small group of imposters, not against those who genuinely believe in their autistic identity. I guess then the problem is how to differentiate between the two groups?

I hope I haven’t upset anyone – and I hope all I have done is identify that a small number of people who go against decent principles should not have the influence to tear apart a wider community. There will always be people who want to manipulate and cheat – the fight should be against them.

6 thoughts on “The Diagnosis Debate”

  1. Bravo!!

    You nailed it!! :)

    The following *especially* had me cheering (as in, the cats got worried lol!):
    – “Who is the assessment police?”
    – “This should not happen; those few (and I really do hope they are very few) should not be allowed to influence the amazing community that exists in social media – the one of support, acceptance, understanding, sometimes profound disagreement – but done in an accepting manner – to have this threatened by a few individuals who are presumably a far cry from the integrities shown so often within the autism community, is devastatingly sad.”

    Very well-organized, well-thought-out, and well-expressed. I enjoyed this very much!

    Anyone who got upset by your post has (serious) Issues and is probably a dolt. :)

  2. Great Post! So pleased you articulated what I too feel but am ill-equipped to write such a considered and lucid manner.

    The few deliberate ” imposters” may be trouble makers but the Autistic ” community” doesn’t have to allow their existence to wreck our attempts to consolidate our shared identity.
    The huge task ahead of us requires focus on our autistic existential commonality not red herrings imposed by imposters.

  3. I have probably been suffering some neural impairment since birth – as a result perhaps of some genetic predisposition. The resulting behaviour is perhaps then inadequately labelled with the rather broad term ‘autistic’. I’d just as gladly self-identify as something else, as will probably happen quite so much with so much research going on. I only know it would almost certainly be helpful to have some sort of expert acknowledge roughly why I have always been ill-at-ease

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